I called my neurosurgeon last Friday and cried uncle. Things had gotten out of hand with the pain and the dizziness and I knew it was time to pick up the phone, so I did. But on the message I left, I was vague about what was going on. And so it was late Monday before I got a call back.

And then I uttered the magic words. Face tingling.

Wow. You’d have thought I said that I had a bomb strapped to my chest that I would detonate in a kitten farm if they didn’t deal with me in that moment. There was a conference with the neurosurgeon right then and there, wherein they decided that I didn’t just need to be seen, I needed a brain MRI first. I was told someone would call me back to schedule that day.

I finally called them today (the nurse was really confused because she swore someone called me) and I got an appointment for an MRI at noon on Tuesday and an appointment with the neurosurgeon at 1:30 the same day. We’re doing it wham-bam-thank-you-ma’am style this time. No waiting for results, just image and appointment.

I fully expect this MRI to come back clear, I’m not worried, except maybe about the cost. The MRIs always come back clear, and so before we scheduled I questioned the need to have another one. They assured me that it was time to do another one of my brain because it’s been a while, so I gave in and agreed. What’s another few thousand dollars between friends?

Here’s how it’s going to go- I’m going to have the MRI, I’m going to walk to the doctor’s office. He’s going to hem and haw a little and then say that everything looks normal. And then we’re going to sit there, awkwardly, in the silent void, while he thinks of things to suggest and I think of how frustrating this process is.

Aside from this MRI, I think we’re done with tests. We just sort of ran out of them.

We know I have low pressure, in fact, we know I have pressure that is getting lower and lower. It started at 8, which is moderately low and at last check it was 4, which is outside of the norm low. It’s not fixing itself and the headaches sure as hell aren’t improving. I now have dizziness as a constant companion and the ear ringing is at an all time annoyance peak.

So I have this low pressure, but we’ve done every test there is to do and I don’t have a spinal fluid leak, which is literally the only documented cause of intracranial hypotension. Go ahead, google it. I have. Over and over. There’s nothing else. I have a condition but I don’t have the only documented cause. Isn’t that special?

And now it’s time to treat it. I honestly have no earthly idea of what the treatments could include, because all the literature seems to indicate that I’m an anomaly (which is pretty much my favorite thing to be). But there must be something. There has to be some drug, some diet, some change I can make to increase my pressure and I’m ready to try just about anything.

When I told my husband that I knew he was right and that it was time to stop having tests done I sobbed and sobbed because it felt like defeat. It felt like I was giving up and letting my pain control everything. It felt like, if we quit looking I was accepting that this was my life, forever.

But I’m not.

Because I’m not walking away, I’m not accepting defeat or this fate. I’m just trying to find a way to control it. It doesn’t matter if it’s caused by a leak or my body being defective. It’s just time to fix it, however, with whatever, and at any cost.

And that will be my mantra on Tuesday.

It’s time to try something, anything, because I’m just not willing to lose another 7 months of my life to pain.

I truly don’t know if I can continue on like this and I’m scared to think about the alternative.

Oh. My. God. This day has been the opposite of what it needed to be.

I called the neurosurgeon promptly at 9 and left a message with the nurse practitioner, explaining that I went to the ER and had the blood patch which didn’t really work. I gave her my cell phone to call, because I don’t know, I guess I thought I was going somewhere. Or because I’m stupid. Whatever.

At 10:55, my phone made a noise. A noise indicating that while it didn’t ring, I had a voicemail.

Of course it was from the nurse practitioner and of course when I called her back less than 2 minutes later she didn’t answer. I love my iPhone, but I hate AT&T coverage with a conviction that borders on sacrilegious. If Apple announces tomorrow that their iPhones will be useable on the Verizon network, I will go out, pay whatever enormous fee AT&T wants and run for my life.

Ahem. Anyways.

And so I waited. And waited. And cried. And called. And waited. And called. And waited.

At 3, I got a call from the nurse practitioner. The neurosurgeon wants to do another blood patch, a much higher volume one (for those who missed the blood patch explanation last time, it’s when they take blood from your own veins and inject it into the area just outside your spinal canal (the epidural space) and then it clots and closes the hole where the spinal fluid is leaking) to seal this leak for good.

But, this can’t happen until:

a) I got an get a FULL history and physical. Um. What the hell? It’s my own blood. Are you afraid I’m going to give MYSELF something? REALLY? I understand checking my clotting factors, but a full physical? So I have to ride for a solid hour in the car tomorrow morning to get to my student health center to get a physical. And let’s not forget that we’re doing this because I can’t even sit up for more than about 2 minutes at a time, but yea, let’s go ahead and do a fucking physical.

and

b) We wait a few days. Because the blood that was shot into my epidural space yesterday has to absorb some so that there’s room to shoot more in (more needles in my spine. HOORAY!). And if we don’t give it time, the blood might not go to the right place and then this big fucking circus will be for nothing. Which you know, only sounds EXACTLY like something that would happen to me.

So the nurse is going to see if she can schedule it for Friday.

FRIDAY.

In case you were keeping track, that’ll be six consecutive school days I’ll have to miss if they can even get it scheduled for Friday. If not, we might be waiting until Monday. If we’re waiting until Monday, I just might lose my mind. Oh wait, too late.

My twitter stream, much like my attitude, is a little toxic today, and I apologize for that. I’m doing the best that I can. But right now the best that I can is being bitter and in pain. I’m tired of always having the unexpected complications, I’m tired of the worst case scenario always being the only scenario.

I’m tired.

So I said I was going to go get a blood patch today, right? And I did. Because honestly, this is the most pain I’ve ever been in ever. Ever. And I do tend to like to be a hero, but not this time. No way.

A very nice anesthesiologist (Dr. Balls, I swear to God), did the blood patch and I immediately felt better. He gave me a few minutes lying down to recover and then he sat the bed up. For the first minute, I was elated. The second minute, it stopped feeling so great. The third minute it fucking hurt.

I got them to lay the bed flat, thinking that I just needed more time. I napped flat for about an hour and then sat up. The pain wasn’t as instantaneous, but it was there. I thought maybe it was a little better.

We hung around the hospital a little while longer and eventually they decided that there just wasn’t anything more to be done. As I waited for my mom to bring the car, the pain came screaming back, every bit as terrible as it was in the morning, before I had the latest needle shoved into my intervertebral space.

The car ride home was 30 minutes of pure hell.

And I’ve been lying flat on my couch since then. When I sit up, it feels like the world is going to end. When I lie back down, it takes some time, but it does calm down, it is bearable.

Today I wasted HOURS, I wasted pain, I wasted my mom’s time, I had a needle shoved into my back and it was all for nothing. And now I’m going to have to miss another day of classes, go to another hospital (I’ll be speaking with my neurosurgeon tomorrow and he’ll be fixing this, damnit) and have the same fucking procedure done again tomorrow.

I am miserable.

I am disheartened.

I am upset.

I am in pain beyond my worst nightmares.

For the first time ever, I wish I just had my normal headache. I wish I could have even the normal, shitty version of my life back.

I wish.

After the disastrous first attempt at the myelogram, I had steeled myself for drama at Friday’s lumbar puncture and imaging festival. I just refused to believe it would actually happen. I mean really. It’s me we’re talking about here.

Much to my dismay, it went perfectly. The lumbar puncture was pretty uncomfortable, but I didn’t have a reaction to the contrast, I didn’t have a seizure and we made it out relatively unscathed. All things worth celebrating for sure.

But wait, there’s more.

When they did the lumbar puncture, they measured my opening pressure. The only other time they measured it, it was borderline low at 8. But that time my “fabulous” neurologist didn’t actually write anything down, so we had no record of it. It was basically my word and the new neurosurgeon who’s unassociated with the old neurologist really had no idea what to think.

Friday it was 4.

FOUR.

8 is barely low, 8 is the lower cut off for normal range opening pressure (on the scale these doctors use). On Friday they did the puncture under fluoroscopy so there was no doubt about it being user error or crappy techniques. And I measured an opening pressure of 4.

I am not crazy.

Did you hear that? I AM NOT CRAZY.

Friends, that is called vindication.

However, vindication evidently comes at a steep cost. Because by around 8pm on Saturday, I noticed that my head didn’t feel normal. I was getting up a little more since my 24 hours of flat lying had passed, but it seemed like the pain was growing. I tried to shrug it off. Last time I got a spinal headache it was well beyond 48 hours after the puncture and I was barely at 30 hours post puncture then.

Yea, well, my body doesn’t really give a shit how many hours it’s been. I have a spinal headache.

And I know I bitched about how bad it was last time and I know I complain about how much my head usually hurts, but holy shit, this is by far the worst headache pain I’ve ever had. In fact, it exceeds the worst pain I ever thought imaginable. When I stand up, it feels like my whole head is in a vice. A vice dipped in scalding hot battery acid. Scalding hot battery acid that weighs 800 pounds and pushes my head down to the floor.

It’s bad. It’s really really truly really bad.

I didn’t sleep much last night because of it. I couldn’t lie on a pillow, but in my sleep I kept grabbing it. It took much longer for the pain to go away when I went back to flat, which made it hard to find any rest at all. I couldn’t even have my computer screen on because the light was too bright.

When I got up this morning to pee, I thought I might hurl, the pain was so awful. And so, when the clock struck 9, I called my neurosurgeon’s office. They patched me through to the neurosurgeon on-call and I told him what was going on. And his response, in the most dismissive tone I’ve ever heard was, “well, then you should probably go to an ER.”

No compassion. No concern. No help. Just go to the nearest ER and see if they had an interventional radiologist around on a Sunday morning who could squeeze me in for an epidural blood patch. No worries about how I can’t even sit in a freaking waiting room because the pain makes sitting up a freaking nightmare. No worries about making sure I’m okay. Just go to an ER and leave him alone, essentially.

I talked it over with my sister, my husband and my mom and we came to the conclusion that it would be best to give it one more day. There were a lot of factors, but mostly we figured the ER would be busy and there was a good chance that there wouldn’t be a qualified radiologist around to do it.

So my mom is on her way to Los Angeles now. Tomorrow I will call my neurosurgeon’s nurse and see if it would be possible to schedule a blood patch at their hospital so the waiting could be minimized. If not, we’ll go to the hospital a few miles away and wait it out and hopefully get this fixed. I am beyond frustrated to be missing so damn much school already. It’s not fair and it sucks. But more than that, I can’t tolerate this pain.

I’m pretty strong, I have a pretty high tolerance, but this is just horrific. This is pain that I hardly believed existed.

This is hell.

But despite the pain, despite the guilt over missing school and wasting more of my family’s time, I have evidence that something is wrong. I have proof that it’s not all in my imagination. I have a documented objective sign that we can’t give up yet.

I may be in hell, but I have hope again. And that will see me through.

This past week has been potentially the worst ever, headache wise. And yes, the stress has been monumental, but the stress ended Monday and the headache has raged on.

When I got home from my exam on Monday I took a 2 hour nap and then went to bed at 9 anyway. Despite the number of hours I’m spending attempting to sleep, I’m not actually achieving very many hours of actual rest. Add to that the eye issues and the neverendingholycrapomg ringing in my ears and I’m just this side of CRAZY.

On Monday, Slappy and I went out to dinner to celebrate my being finished with the semester. By the end of dinner, I was nearly in tears from the pain. We were going to do some holiday shopping at Target and I couldn’t. I couldn’t do anything but lie down. Moving any muscle, using any energy was excruciating.

The headache is the same as it has been for almost 20 weeks, but it is more intense. More all consuming. More painful.

After I got the news of the perfectly normal cisternogram, I called my neurologist’s office and scheduled an appointment. The earliest they could fit me in was January 21st. And for a day, I accepted that as a part of the shit-fest that was my life.

And the next day, I picked myself up, I got mad and called the nurse and said NO. Because by January 21st, I’d have almost reached the 6 month mark with headaches. And that is not acceptable. And the nurse agreed.

So I’m going back to my neurologist tomorrow.

The message she left me two weeks ago said that it was time to start treating the headaches because we were finished testing. And that is not acceptable either. Why are we treating a headache that we don’t the cause of? Why are we giving up already? What happened to her promise that we’d figure it out?

We know I have low spinal fluid pressure, that we’ve seen twice now. We know I have low CSF protein, the lab reports confirmed that. And we know that the cause of those 2 things in conjunction is a spinal fluid leak. Period.

And to assume that because one test, (which involved lying down for 3 days and not doing any activities that would actually cause a leak) is an accurate measure of whether there’s any chance of a leak, is crazy. And it’s not going to work for me.

So tomorrow at 8:30, I’ll see the doctor and I’m going to ask her some questions. And if she’s giving up, then I’m giving up on her. I have the name and number of a neurosurgeon in Los Angeles who specializes in CSF leaks and my insurance covers him.

So the bottom line is that my doctor gets one more chance. And if she doesn’t follow through on her months old promise, then I’m moving to the next stop, the next doctor.

Several times I’ve come close to quitting everything. I’ve said I was going to and I’ve actually meant it. But for a variety of reasons, I haven’t.

I’m not giving up. I can’t. This is my life we’re talking about.

Tomorrow I start fighting again.

In 19 weeks, I could gestate half a baby.

In 19 weeks, I could’ve trained and run a marathon.

In 19 weeks, I could’ve done more things than I can even begin to list here.

Because 19 weeks is a really long time.

But, instead, for the last 19 weeks, I have been in pain.

And though I’ve tried to dial back the whining here, the pain and all over horrible way I’ve felt for the past few days has rendered me useless. All I can do is whine.

I have 2 tests tomorrow and then I’m done for the semester. DONE. The end is so literally in sight, but it is covered by this huge ass boulder that is relentless pain.

I’m trying, but I can’t study. I’m not learning anything no matter how many times I flip through my notecards or flip though my study guide. I’m trapped in this bubble of endless pain.

The idea of getting out of my bed, driving to school and taking 2 tests tomorrow literally makes me cry.

Though to be honest, my head hurts so much tonight that the idea of waking up tomorrow at all makes me cry.

On November 27th, 2007, I did what I thought was best for myself. I had a surgery, which for all intents and purposes, was elective.

I chose to have a skilled neurosurgeon remove a piece of my skull, of my first 2 vertebrae, release connective tissue in my brain and put a piece of cow heart lining on my brain’s lining.

I chose that.

And from that surgery, I got 8 months of freedom. I had 8 months of normal life, without pain, 8 months that will stand out as some of the best of my life. In those 8 months I returned to work, school and got married. I was a functioning human.

Last year, when I reflected back on the surgery, I was in the midst of a different (and holy crap so much less severe) long lasting headache. But at that point, I was still sure that I had made the right decision in having this surgery.

But this year, things just aren’t as clear.

There are some things that are markedly better than they were 2 years ago. 2 years ago my balance was awful. I almost fell over at a wedding from standing with my eyes closed. 2 years ago, my eyes would dart from side to side unpredictably, rendering me virtually incapacitated.

But 2 years ago, my left hand didn’t tingle. 2 years ago, my head didn’t hurt with a ferocity that literally brought me to my knees. 2 years ago, I wasn’t sore from lumbar punctures. 2 years ago, I had a diagnosis and a solution.

And I don’t know when the hurting will end. I live with fear and pain that 2 years ago only existed in my nightmares. The nightmares that are now my life.

As time has passed, my body has worked to cover the only real proof I have of what I endured. The scar is now light colored, it is surrounded by hair and if you aren’t looking closely, you might not even see it. But at the same time, my life has worked so hard to remind me of what that scar lies above. Of the pain and fear and unknown. Of the possibilities of more scars and more suffering.

(2 days post-op)

(2 weeks post-op)

(1 year post-op)

(2 years post-op)

Maybe next year the scar and the pain it represents will both be more invisible.

Maybe.

I understand that a lot of you don’t understand why I’m upset. Because for all intents and purposes, this is crazy. I should not be devastated to hear that everything’s normal. I know that.

Except.

Except that everything is so clearly not normal. I have heinous headaches, low pressure in my head, and I have low protein in my CSF. I have done all the research I can, and the only reason for low pressure and protein is a CSF leak. The only reason. I invite you to do your own research, I promise, there’s simply no other cause.

Except.

Except, I apparently don’t have a leak. I don’t have the only cause for the problem we actually know I have.

And I foolishly, FOOLISHLY, let myself hope. I hoped that we’d find an answer. I hoped that there would be a solution. I hoped that this would be the first step to stopping the pain. I hoped that there would be a light at the end of the tunnel.

Except.

Except there isn’t. There’s no answer. There’s no solution. And the tunnel has never been darker, more lonely or more full of hurt. And there’s no more hope. I’m done with hope. Hope has gotten me no where. It’s gotten me hurt, it’s made me weep.

And I don’t know where we go from here. This test has been my target, my goal. Just make it to this test. Just make it to this diagnosis and then figure things out. Once the diagnosis is determined, we can fix it and then I can try to go back to normal.

Except.

Except there is no diagnosis and so there’s nothing we can do. I don’t have a goal anymore. I am facing the future with outright fear, with panic. Because I cannot live like this. I have had a headache for 4 months. For 1/3 of this year. And there’s no answer. There’s nothing that can be done. I cannot live like this.

Except.

Except apparently that’s my only choice.

After days of phone tag with nuclear medicine, I finally got a call and got the cisternogram scheduled.

When the nurse gave me the information, I flipped open my iCal, plugged in the information about my appointment and realized, with a mix of happiness (over finally having it scheduled) and horror (over the timing), that the appointment was for Monday morning.

I started panicking. I have a make up test scheduled Thursday that I really want to get out of the way and I’m finally starting to get on top of my work. I was more than a little bummed. Add to that that my husband has work and my mom would have to do a lot work rescheduling to come, and that little panic turned into a tornado of concern. And I felt like I just didn’t have enough time to process or prepare. I had to contact teachers, I had to rearrange so much, and quickly to boot.

So then when I went back to iCal to check my next exam date, something about what I’d recorded about the cisternogram seemed wrong. And then it clicked. I had opened iCal and flipped ahead, not to next week, but to the week after that. Because I’m an idiot. So the test isn’t actually until the 23rd. Which is not in 3 days. It’s in 10.

Which is nice, because now I don’t have to push back this anatomy test another day.

BUT, it’s 7 extra days to worry. It’s now the week of Thanksgiving, which I’m supposed to spend with my in-laws, who do not deal well with my health issues (I’m refraining from commenting more here, because I’m trying to draw a line. Understand how painful this show of restraint is). And if I do have a leak from the lumbar puncture this time (which, the research says is HIGHLY likely since I had one last time), I’ll have to go to an emergency room to get it fixed or wait until the following Monday because of the holiday. And, probably what worries me the most is that my family is celebrating the day after Thanksgiving, which will be an issue if I can’t be upright because two hours in the car will be excruciating.

I’m trying to be thankful to finally have this test scheduled and be one step closer to some answers, but there are just a lot of things I’m concerned about.

And, on top of that, I’m back into this place of limbo that I hate SO much.

Because on the one hand, it’s absolutely fucking crazy to want something to be wrong with you. Seriously. That is the stuff of crazy people, and I know that.

But on the other hand, I’ve had a headache for almost 15 weeks. I just want my head to not hurt and if that means wishing for something to be wrong, something that we can fix, then that’s where my hope lies.

Yes, it’s crazy, but the idea of going through this trouble, having these tests, and going back to square one with nothing wrong is mentally devastating.

So for now I sit in limbo. With worry and m&ms. With pain and fear. With the tiniest bit of hope, that is rapidly dwindling.

I’m tired of this headache. This horrible horrible headache.

I’m tired of talking about it.

I’m tired of thinking about it.

I know you’re tired of hearing about it. Sorry.

I’m tired of playing phone tag with my neurologist’s office.

I’m tired of being jerked around by the nuclear medicine scheduling office and still not having the damn test scheduled, even though I was promised that it would be scheduled today.

I’m tired of worrying about the damn test.

I’m tired of taking pills I know won’t help.

I’m tired of having so many questions.

I’m tired of having so few answers.

I’m tired of being awake for half of the night.

I’m tired of feeling like a burden on the people in my life. On you who read.

I’m tired of people feeling sorry for me.

I’m tired of feeling sorry for me.

I’m tired of this pain.

I’m tired of my life, or what it has become.